Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health or diagnoses, please consult a doctor or medical professional.
If you’re anything like me, certain signs or symptoms of your autoimmune disease started showing up years (or for many of us, decades) before you were actually diagnosed. But even though I began exhibiting unusual symptoms as early as 8 months old and continued to have inexplicable health problems throughout childhood and adolescence, doctors could never connect the dots. Oftentimes my symptoms were dismissed entirely – excruciating knee aches were just “growing pains,” and debilitating fatigue was simply the result of working hard in school.
For many of those with autoimmune diseases, receiving a diagnosis as an adult not only puts a name to your current set of symptoms, but can also validate and make sense of some of your childhood experiences. We asked our Mighty community to share some of the signs they grew up with an autoimmune disease, which they now recognize in retrospect. Maybe some of these early “signs” will ring true for you, too.
Here’s what our community shared with us:
1. “A sign for me was constant body aches and headaches. I was always told it was growing pains but now that I’m all grown, the pains never left and only became more frequent and more painful.” – Amy L.
2. “In high school, I thought everyone felt the same fatigue I felt. So, I couldn’t understand how my girl friends were able to run up and down the basketball court so much without wanting to collapse, didn’t have to rest at the top of the stairs heading to class and didn’t bleed through the thickest pads within two hours during their cycles. I thought all that was normal.” – Sarah N.
3. “I had ‘stomach bugs’ way more often than anyone else in my family. I also had bouts of super high blood pressure as a teen.” – Erin P.C.
4. “I was always sick. I couldn’t keep up with my friends. And there was literally nothing my mom could do to get me out of bed in the morning – I missed so much school. Also never digesting food properly. I was eating Tums before I was 10 years old like they were candy!” – Bianca P.M.
5. “Terrible headaches, fatigue and joint pain with weather change and menstrual cycle. I had no idea what they were, I thought it was stress and whenever I complained it was seen as just not wanting to go to school. Turns out I was probably symptomatic from age 11 on. Not diagnosed with lupus and chronic pain and chronic fatigue until 19.” – Heather S.
6. “Constant canker sores and growing pains worthy of a hospital trip.” – Ashley H.M.
7. “Generally always being sick from a very young age. I picked up every cough, cold, virus, bug… you name it, I got it. When I got my first tooth, I had to be put in an oxygen tent because I’d contracted pneumonia. I had salmonella when I was around 18 months old. Was a pretty sick kid during my childhood – I got mumps and German measles, hit my teens and suffered migraine and chronic tonsillitis so I had to have them removed in my early 20s. I’ve been left with chronic fatigue and gastrointestinal problems in my mid 30s.” – Gemma B.
8. “Fatigue. I was diagnosed with the first of them by age 10 though. Swollen glands (looked like I had the mumps) was another dead giveaway. I never fought my bedtime as a kid, loved curling up and reading until I fell asleep.” – AnneMarie G.
9. “I was always very tired and needed a lot of sleep. I got terrible headaches. Even though I could handle stress emotionally, after the event my body would crash; I couldn’t stop my body from reacting so harshly. Food caused me pain. I was told to just push myself, and I did. Biggest mistake of my life: not listening to my body.” – Tamara L.
10. “Chronic yeast infections. I’d get them almost monthly despite eating yogurt and taking probiotics. Now I realize it was because my rheumatoid arthritis had compromised my immune system.” – Maggie M.
11. “I was sick so much my mom started sending me [to school] with fevers so the cops wouldn’t come due to my lack of attendance. Also most of my senior year was spent in the hospital. Between strep, sinus infections and UTIs, I don’t know what I had more. I also had the weird stuff like thrush and folliculitis in high school and as an adult which was what tipped the doctors off to immune system issues.” – Jamie H.
12. “I was always exhausted. I could fall asleep anywhere and would sleep into the afternoon if I could. My dad would have to tip my mattress to get me out of bed for school in the morning.” – Taylor M.
13. “My butterfly rash. Years ago when I was in my late teens I was told I should wear less makeup – it wasn’t makeup, it was my butterfly rash. At the time I had no idea what it was, I just felt ashamed and really uncomfortable being around people. Now that I know what it is, I find I don’t get as upset by other people’s ignorance.” – Sophie R.
14. “Being extremely ill for months with a ‘virus’ that just didn’t make any sense. I was 7. After that I was a kid that always complained of sore and swollen joints hurting especially in bad weather. I don’t know how I managed to do ballet like I did.” – Jessie L.S.
15. “The fatigue! Also exercise hurt so bad and I could never understand why anyone found it fun, for me it’s always been painful. It causes achy joints and muscles. Then there’s the flu-like symptoms I felt after being in the sun, especially on days we had to participate in an outdoor day. I would come home and get a huge blanket and lay on the couch, feeling like I had the flu.” – Deborah M.C.
16. “Growing up I had constant ‘growing pains’ in my legs. I remember crying over the pain and doctors telling my parents it was typical. Fast forward a few years and I began to develop rashes, but they were assumed to be heat rashes from being outside so much. Now, the rashes and lower extremity joint pain are a daily occurrence. If only we knew then what we know now.” – Kate G.
17. “Extreme fatigue, joint pain, dizziness and near fainting. All checked out and tacked up to ‘being a teenager, growing pains and not drinking enough water.’” – Leah C.M.
18. “Hair. Loss. This was the big one. I never understood why I always lost so much and it was so embarrassing for me in school (and it was already bad enough thanks to bullying for other reasons). I found out only like a year ago that I have hypothyroidism/Hashimoto’s. I’m 26 now. The women in my family have it but because of the lack of knowledge and awareness, I wasn’t warned that I would have it. I look back now and realize all of the other symptoms I had, but hair loss was (and still is sadly) a big one.” – Lily S.
19. “I always had a sore stomach throughout my entire life, and nobody ever believed me. It was mostly chalked up to anxiety because it seemed like it would happen before I had to participate in something that I was apprehensive about. Turns out I have celiac disease, I found out this summer at age 28.” – Jane W.
20. “I would always have these unknown infections: fever, high white blood count and random symptoms like rash, GI upset, migraine, sore throat, etc. But the doctor and my parents could never quite figure out what was going on.” – Tami M.
21. “My family always accused me of hogging the bathroom, especially right after eating. My brothers complained I never took my turn washing dishes and that I was just hiding. That bloody diarrhea was finally diagnosed as ulcerative colitis when I was 19. Lost my colon at 30. Plugging along at 55 with an ileostomy and still have to run to the bathroom after eating!” – Barbara S.
22. “I fully believe that the anxiety, headaches and stomach issues I suffered through growing up were all signs of my thyroid disease. I am forever grateful to the nurse practitioner who thought to request a complete thyroid workup for me about 10 years ago.” – Carrie Anne M.
23. “Since my teens I would wake up with a stiff neck and shoulders. I struggled washing my hair in the bath in the mornings because of this. Looking back, could this have been a sign of SLE that was diagnosed in my 30s?” – Janey G.
24. “Eczema, chronic sore throat. Went from being able to run track to not being able to run track between sixth and seventh grade. Heart palpitations. Then in my 20s I discovered I had endometriosis and PCOS.” – Jerri L.
25. “I have had allodynia my entire life and nobody knew what it was. My skin would be so sensitive to touch that I just wanted to be suspended in midair, naked, so nothing was touching me.” – Lona S.
26. “At 16 I became allergic to a lot of things, including silver, which I’d never had a problem wearing before. It was a full eight years before I was diagnosed with ulcerative colitis.” – Karen M.
27. “My main sign we realize now was how easily I cried when I got hurt. I would stub a toe and end up crying for almost an hour and it would hurt to walk after I stubbed my toe.” – Victoria M.
28. “I never seem to have the energy and motivation that other children did. I was always exhausted midday. Sicknesses seems to hit me much harder than they did my classmates. Those around me always felt like I was being lazy or faking how I was feeling.” – Jessica L.O.